India had its first aHUS patient conference- what next
India has had its first patient conference. A summary of what was covered has been posted on line and reposted below.…
Is this the beginning of the end of an aHUS journey in India?
Frequently these days people talk about their "journey". I have known of the journey of an aHUS patient in India for…
Advocacy for aHUS and “aHUSs”
When it comes to advocacy why say there is aHUS and there is also aHUSs? The rare disease aHUS is described…
Mastermind on aHUS
Imagine atypical haemolytic uraemic syndrome or aHUS on a well know quiz show, say Mastermind. How would it look?--- The Mastermind…
New Canadian Expert Center for Complement-Mediated Rare Diseases
Launch of a Canadian Expert Center for Complement-Mediated Rare Diseases (CHU Sainte-Justine Centre d'expertise sur les maladies rares médiées par le…
Is there a PDA for aHUS treatment continuation?
A PDA or patient decision aid is becoming an important part of the increasing shared decision making by patients and doctors.…
Registries for the rare disease aHUS
Global Action has more than any other organisation promoted the research registries that exist for our rare disease. Many rare diseases…
A patients perspective of aHUS name change
For the past nine years Global Action has been at the forefront of featuring the aHUS name change journey. Currently proposals…
Global Poll for aHUS – Progress Report
Last Summer nearly three hundred aHUS people from around the world participated in the 2024 Global Poll. They filled in a…
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